The Other Half spent more of December in the hospital than out of it. We finally found out why. In addition to a very nasty, drug-resistant urinary tract infection he has bladder cancer. Urothelial carcinoma, to be precise, and it’s gotten at least as far as the local lymph nodes (he’ll be getting a PET scan as soon as we can arrange it to determine just how bad this is). It’s an aggressive form of the cancer. He will definitely be getting chemotherapy.
To say we’re not happy is a vast understatement.
Not entirely sure what to expect, other than a shitload of paperwork. Spent an hour and a half on the phone yesterday trying to stay ahead of the game and resolve problems that have already come up. Fortunately, relatively minor. So far. I’d be spending just as much time on the phone today, except it being the weekend most offices are closed. I’m off again on Monday, so I’ll be working on that sort of thing again.
So, Dopers - what should I expect? What can I do to help him through/recover from chemo? He’ll be getting platinum based drugs, which I understand involve some considerable side effects.
He’s in a lot of pain right now - the scar tissue from multiple surgeries he’s had in the past seems to be inflamed in his lower abdomen in addition to whatever is normal (!?!) for this sort of cancer. Of course, if he would stick to the medication schedule that would help but he’s concerned about drug resistance and dependence. Well, I don’t think letting things get really bad before taking the next dose is helping, either. I have to convince him that alternating between “agony” and “high as a kite” is worse than maintaining a steady input of narcotics at this point.
I got him a cane and he’s using it, it’s been very helpful in keeping him steady and not falling. I’m going to be moving stuff out of the bedroom-to-bathroom hallway to make it easier to navigate and allow for possible future need for a walker or wheelchair - at best he’s unsteady on his feet, when he’s this debilitated it gets a lot worse. I’ve been using the laundromat drop-off service to do the wash because that gives me more time to work on all this other stuff. His appetite is nearly non-existent, so I got in a supply of Glucerna. Between those and what little he does eat he seems to have stopped losing weight right now, which, being down 25 pounds in a month, is probably a good thing.
Frankly, I don’t know what’s normal here, or how to help him much, and I’d value some input from either professional medical types and/or people who have been through this sort of thing. The level of pain is frightening and is what is making me most afraid this is even worse than we initially thought.
When he gets chemo, is the pain going to increase even further? If chemo is effective, does the pain go down a few days after treatment?
(Yes, I am certainly talking to the medical professionals but I reserve the right to talk to everyone else, too.)
I’m quite concerned about taking the time to care for him AND keeping my job. My work place has been pretty supportive already in regards to that and pushed the FMLA paperwork on me a couple days ago, so that’s in process. I’ve got another form to send to the insurance to allow me full authority to discuss his medical issues/billing/whatever. We’re talking about power of attorney and so forth, and while I’m not entirely sure where to go for that I expect finding out will be one of the more simple things I deal with in the near future. We are already discussing his preferences and possible end-of-life scenarios, including what he wants done with his stuff. It’s hard, but both of us would prefer to lay these things out on the table and get some resolution than keep them bottled up.
I don’t know how truly bad this is at this point. He’s past the “early, almost certainly curable” stage but I don’t know the odds of driving this into remission, or whether he’s already terminal, and I don’t entirely trust the doctors to tell me (or him) in explicit terms when it gets to the terminal point. And, of course, they probably don’t know for sure at this point, either, hence the need for a PET scan.
I dunno, maybe I just need reassurance.
Anything really detailed and medical coming from medical pros I’d sort of appreciate in PM’s, I guess this is really a thread for my psychological support as much as anything else. Yes, I’m marshaling my support network, because I anticipate this will get worse before it gets better.